BrAshA-T, Brisbane, Australia
President's Report 2019 Financial Year
Mon 21 Oct 2019
Thank-you to all of the members of the Board over the 2018/19 Financial Year. As a 100% volunteer run organisation, I'm very proud of how much we are able to achieve for such a rare disease.
Rob Marcialis stepped-down from the board during the year and Leah Ward has chosen to step-down at the AGM. Many thanks to both Rob and Leah for all of their support on the board, especially considering they both work full-time and are primary carers for A-T Superstars. Representation from A-T families is vital to sound decision making on the board so they are both significant losses to the organisation however the impact was very much lessened with Gabe Marcialis replacing Rob on the board.
While technically it was during the 2020 year (August 2019) that Jenny Johnston resigned from the board, it just wouldn't be right to not take the opportunity now to thank Jenny for all of her efforts during the entire 12 year history of BrAshA-T, a truly marvellous effort! A special thank you also to Jenny's husband, Johno, who was an ever-present supporter of BrAshA-T and of the time Jenny devoted to the BrAshA-T cause.
I wish to acknowledge Prof Ernst Wolvetang and Prof Martin Lavin for forming an integral part of our Research Advisory Board. We are blessed to have two of the world's leaders in their respective fields right here in Brisbane. The opportunity to meet face-to-face with them on a regular basis is invaluable and they are always very giving of their time despite extremely busy schedules.
A record $315,000 was spent on several research project throughout the year including:
- Lung Project - Prof Martin Lavin and Abrey Yeo, UQCCR (University Queensland Centre for Clinical Research)
- Generation, Correction and Differentiation of AT-iPSC (A-T induced pluripotent stem cells) - Prof Ernst Wolvetang, AIBN (Australian Institute for Bioengineering and Nanotechnology)
- Oxidative Stress, Metabolite Insufficience and Mitochondrial Dysfunction – Prof Martin Lavin and Prof Dave Coman, UQCCR/Wesley Medical Research
- The Use of Stem Cell-Derived Neurons for Understanding Development and Disease of the Cerebellum - Sam Nayler and Esther Becker, University of Oxford (UK)
- Longitudinal Brain Studies - Dr Rob Dineen, University of Nottingham (UK). Co-funded with Action for A-T
- Blood Cancer Therapies - Prof Malcolm Taylor, University of Birmingham (UK). Co-funded with Action for A-T
- Natural History of A-T - Dr William Whitehouse and Dr Emily Petley, University of Nottingham (UK) co-funded with Action for A-T and A-T Society
- Global A-T Family Data Platform - led by A-T Children's Project, with Whole Genome Sequencing of Australian A-T patients funded by BrAshA-T
- ASO Gene Therapy - Dr Timothy Wu, Harvard/Boston Children's Hospital, led by A-T Children's Project with contributions from BrAshA-T, Action for A-T and A-T Society
- ATTeST International Clinical Trial - Dr Monique Ryan, Royal Children's Hospital Melbourne, funded by Erydel, with recruitment support from BrAshA-T
The National A-T Clinic has gone from strength to strength thanks to the Queensland Children's Hospital, Wesley Medical Research, Dr. Dave Coman, Nicoletta Sandona and the many clinicians who participated. Clinics were held in November 2018 and May of this year and also serve as a valuable source of data for research and the opportunity for social interaction amongst the A-T Superstars and their families.
An important date on the calendar during the year was the A-T Clinical Research Conference
in Naples in December 2018. Many thanks to Natalie Elkheir and Leah Ward for representing BrAshA-T. Along with ATW2019
in Houston, we contributed $16,000 towards the sponsorship of the two conferences.
2019 was a bumper year for fundraising with $334,500 raised! Fundraising is an essential element in our quest to find a cure for A-T and this past year has been exceptional in this area thanks to:
- Jeff & Carly Millar and the Wagga Wagga community who continued to build on the impressive 2018 total for the Walk to Everest for A-T fundraiser taking the overall tally to $276,500!
- Andie & Gav Clifford and their Stephanie's Choice fundraiser which raised $10,300. This was their daughter, Stephie's, finally legacy in the fight for a cure after she sadly passed away in October 2018
- Stephen Benson and about 20 of his mates and the 70km Paddle for Madi (in kayaks from Bulahdelah down to the broadwater, around the Myall Lakes, and back to Bulahdelah) which raised $35,500!
- Katherine Starr, Scott Robson and their team of dedicated volunteers who, in their 5th year of the Beard Up Boys, raised a record $52,700. In the 5 years the Beard Up Boys have been fundraising, they have raised in excess of $134,000!
- Sal & Nat Elkheir through Coles Supermarkets raised an impressive $18,800 with the Purple Hearts, donation tins and staff fundraisers through Sal's region of Sydney supermarkets. This takes the total raised to $142,800 over the past 4 years!
- Wayne Millar, Jeff Millar's father, for arranging BrAshA-T as TEFMA's nominated charity which raised $6,400 during the year
While research and finding a cure is our #1 priority, another very important function of BrAshA-T is providing support to A-T families, especially those that have been recently diagnosed. Our closed Facebook page, along with replies to public enquiries, are often a tremendous source of comfort and a realisation for families that they are not alone in their fight against A-T. Many thanks to Natalie Elkheir who has taken the lead role in this important function.
Sadly we lost Aaron Jordan during the year. Aaron was a much loved superhero, always smiling, never giving up, despite the challenges and obstacles he faced throughout his life. Nobody can claim to raise awareness for A-T more than Aaron along with his mother,Brenda, and sister Chloe. You can learn more about Aaron and his family's journey here.
Finally, thank you to the hundreds of people who supported BrAshA-T throughout the year. Your support is what gives us real hope that we will find a cure in the not too distant future.
- Research - fund medical research into the causes, prevention and treatment of A-T
- Awareness - engage in activities to raise community awareness of A-T
- Support - provide emotional support and limited financial assistance for sufferers of A-T
- Fundraising - engage in fundraising activities to make it possible to fulfil Our Mission
Our Achievements So Far
Since getting up and running in late 2007, we are starting to bear the fruits of our efforts with considerable progress towards achieving our long-term goals:
- Created a support network for families around Australia affected by A-T who are now in contact with each other as well as the foundation.
- The National A-T Clinics are held in Brisbane at The Wesley Hospital and Wesley Medical Research (WMR), in conjunction with Lady Cilento Children's Hospital and the University of Queensland Centre for Clinical Research (UQCCR), typically in May and November each year.
The aim of the clinic is to enable A-T patients to see experts who have experience dealing with the symptoms and side effects of the genetic disorder, as well as gathering essential data and research to assist in finding a cure.
- Committed ongoing funding towards an allowance program to enable A-T families to attend the National A-T Clinic.
- Committed ongoing funding to support a team of researchers from UQCCR (University Queensland Centre for Clinical Research) led by Professor Martin Lavin.
- Committed ongoing funding to support a team of researchers from AIBN (Australian Institute for Bioengineering and Nanotechnology) led by Professor Ernst Wolvetang.
- Funded researchers to attend Scientific Research Meetings at ATW2008 in Shiga (Japan), ATW2010 in Los Angeles, ATW2012 in New Delhi, ATW2015 in Beijing and ATW2017 in Milan.
- Funded researchers to attend the A-T Clinical Conference in the Netherlands in 2014, Warsaw in 2016 and Naples in 2018.
- Raised significant funds through holding events such as Charity Dinners, Movie Nights, Golf Days, Membership Drives, Merchandise Sales, etc.
- Operated the foundation on 100% volunteer effort thereby ensuring maximum funds are directed to finding a cure for A-T.